My Journey with EM

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My symptoms first started in October of 2010.  I began to investigate my symptoms on the internet.  After searching I came upon Erythromelalgia and ALL my symptoms matched.  I then began my search for a doctor who could and would help me.  I finally found a wonderful neurologist who agreed to help me.  I spent two years confined to a recliner due to my pain.  My neurologist tried various things to help me including Ivg therapy.  Nothing seemed to help.  He then started me on a large dose of Gabapentin (4800mg).  After about a year on it I began to improve.  I remain on 3600mg of Gabapentin today.  I also receive pain medication to further improve my quality of life.  Don't get me wrong I have my days but I am no longer confined to my recliner.  I can now do my laundry, bathe myself, drive some, run errands with my family, and attend family events for which I am so grateful.  I pray things will not change because I do not want to be confined again but there are no guarantees.  Living with EM is a huge challenge.  Walking, standing, exercise, warm to hot weather, bathing and sometimes just being are tremendous challenges.  But I try to just take things day by day.